Nystagmus as a Sleep Disorder?

Hi, I’m new here, and I have Nystagmus which I consider a sleep disorder.
Does anyone else have a problem with sleep or being troubled by this eye condition?
I consider it to be a disorder. And doctors I’ve met don’t know how to cure it.
Has anyone ever gotten rid of theirs, or has it gone away by itself?
I have a remedy for mine, do you?

According to the ICD - 9 -CM codes {The International Classification of Diseases}, nystagmus is not an identified sleep disorder.

It is an ocular condition defined as: Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern.

Well from my observations every time before I sleep or get up, it seems like it’s a form of R.E.M. sleep only while being awake.
I have more I’ve found out: It’s not just the eyes, it’s also based on critical brain functions.
Here’s my main observation: It’s like many other disorders and it can affect your brain in many ways.
I came here to give my findings, if it’s okay.
I’m trying to be as professional as I can. Thanks for replying so quick. I’m surprised! :slight_smile:

Please give me a chance!
That definition of nystagmus you gave might not be correct. I studied my sleep by myself for awhile.
Nystagmus changes in certain environments, and it connects to the cerebellum.
That cerebellum links to memory, sleep, and dreams.
I’m like a doctor to myself. You have to think about it differently. (What causes the movements).
Yes, I studied a bit on the parts of the brain it affects and had to study what I felt what my nystagmus was doing. (Not a Doctor)
Nystagmus can cause tiredness and eye strain, and it affects sleep directly.
When I lay down, it gets uncontrollable, the cerebellum turns on then I sleep.
Isn’t this place patient-led?

Anyway, in summary, I think it’s the brain, not the eyes. It’s what the brain instructs the eyes to do.
When you wake up at wrong times, it gets worse, and if you fall asleep right, it slows.
Nystagmus seems to be like a mix of Epilepsy and Narcolepsy.
It seems like the brain gets confused, and doesn’t know what signals to send. Making everything unstable.
It’s also how the eyes send signals to the cerebellum.
I actually once stopped my nystagmus, but only temporarily. Once with my own glasses I made.
Second time, was when I started having lucid dreams. After I woke up it stopped for a 10 minute period.
Main thing: It’s like a way to cheat sleep. It has ups and downs of course.
I had to study myself because I got “tired” of being told there was nothing I could do about it.

A remedy I made was covering the eyes with a dark cloth and closing the eyes until everything is dark.
It helps stuns the eyes, and can prevent my condition from getting painful. Helped me sleep.
Sorry if that was a handful. If you are confused with anything I will explain it better.

Thank you for sharing your experiences!

The sad thing is, is that I don’t know if this will help. So some deeper detail…
I have Congenital Nystagmus (Born with it)

A CURE for this condition might be related to the cerebellum and limbic system as a whole
Stimulating memory while in a spacious room that is full of sunlight can stop it, leading to your whole brain and body with more blood-flow. This makes you feel warm surprisingly.

Artificial Light might cause Nystagmus as a whole, damaging your ability to have natural rhythm
Being Outside helps your mind have more air, leading to similar blood-flow without warmth.

A couple things that are connected to this eye shaking problem are
Sound, Sleep and Balance, Memory and Vision.
I have had the capability to deal with it.
It seems like sound triggers the cerebellum to turn on and off. If it doesn’t, you want to fall asleep again.
(EHS or Exploding Head Syndrome)
It affects sleep with tiredness, possible nausea, and balance problems.
(possible Narcolepsy)(Vertigo)
It possibly affects memory when the eyes move. Related to the Hippocampus and Cerebellum memory functions. (Like Short-Term Memory Loss) (Dyslexia?)
It affects vision by making you light-phobic (sensitive to light). That means you have to listen to that and avoid artificial light and only have natural light. Going outside more is a great remedy to help nystagmus stop. (Has to do with how the eye senses motion)

(EHS) is a syndrome that doesn’t cause permanent harm just loud sounds during sleep that wake up with a jump-scare.
Vertigo is caused by the continuously moving eyes and it can make you sick.
It might lead to headaches.
It affects memory at times. When the eyes move you might get short term memory however that I still need to study.
Vision gets affected near something that triggers the Nystagmus.

Side notes
I had a lazy eye that made me ignore when those eye movements I was little, and once was cross-eyed. That was probably a way my brain tried to cure itself.
Regular glasses never worked so I made a pair.
I have lucid dreams which stun my moving eyes when I wake, and my eyes go extremely fast and my cerebellum slowly seems to ‘move’ right before falling asleep. (Fastest way to go to sleep, a blessing and a curse.)
My Theories
It seems like I had a focal seizure with vertigo and the nystagmus, that time I recorded that my cerebellum couldn’t transition from sleeping to waking. Perhaps EHS helps you sleep and wake.
Maybe it’s a small part of sleep paralysis gone wrong.
That’s why you must listen to what your brain feels like.
If you have head pain it might become something else.
It’s like the body doesn’t think it’s awake, and honestly I think it naturally tries to sleep correct, but because of artificial light, the brain doesn’t know what’s happening.

Something weird that’s hard to explain is when I’m awake, it’s like narcolepsy with hallucinations (flashes and sparkles, sometimes right before sleep and dreams) and frequencies.
But maybe the stuff I see is from rods in the eye. It even does it when I blink. Might aid sleep.
The frequencies seem to come from the cerebellum and whatever side(s) the eyes affect.
When my cerebellum shook i heard frequencies.

Maybe the brain ‘sees things’ as if you’re dreaming. As I said Nystagmus is like REM sleep.
It seems like those ‘frequencies’ are the brain’s natural way of going through phases of sleep.
Last part!
I would to stay this discussion to stay, but it seems a little off from what others have posted.
It just seems like Nystagmus is more than vision and is a neurological disorder, possibly preventable and curable. I would love to continue on this site. I haven’t been able to say my findings until I found this great place. Thanks for listening! My real name is Ciara L. Garrity

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I am not sure how Nystagmus could possibly be a sleep disorder. Please explain. And mind you, I have Nystagmus myself so I really need to see how you are making the connection. What about nystagmus keeps you awake?

What type of nystagmus do you have? (There are different types).

Generally speaking, unless you can somehow feel the motion of the eyes, I don’t know how this could be disturbing enough to interrupt your sleep.

Reading down your thread, I start to understand the issue from your perspective.

Again not all nystagmus is the same. Some is due to the brain, some is due to the optic nerve. And YES it can be impacted by position. In my case, mine all but stops when I lay down. I do endure terrible tiredness of the eyes and headaches because of it after a long work day for sure.

I have not tied it myself, so I cannot attest to it, but I have read accounts of other optic nerve nystagmus patients getting some relief via CBD, however I have no proof and am uncertain of any legal or side effects issues, so I stay away from that…

If yours is from the brain center associated with vision, your experience will be much different from mine. The external symptoms may look similar, but I do not experience the issues with sleep.

I must admit, I have NEVER considered other types of nystagmus. No disrespect at all intended, it just never occurred to me.

I have to ask some base questions to get an idea of the severity and how it impacts you and these revolve around your visual acuity.

#1. Can / do you drive? I can and do. However on the few occasions I have gotten stopped by law enforcement, especially when I was a much younger man, I have been accused of being intoxicated due to the nystagmus and put through field sobriety tests, even arrested for DWI once with no other evidence than horizontal gaze nystagmus being listed on the arrest report. We got it sorted, but it cost me a good deal before it cost the city where I was at the time… I even offered up to contact my opthomologist for proof…
#2. Does it impact your fine motor coordination? I find with me, some things that others can do, I just can’t, such as fine component soldering, but I am a touch typist, play guitar, and bass without having to look at the fingerboard often. HOWEVER, I am anything but athletic. Although I was in team sports in grade school, I did not do well. The baseball was too hard for me to see well until it was right on me, and my parents didn’t like the idea of me playing football… This long term hasn’t done well for me as I am sure it has a lot to do with my weight gain over the years, which in turn made the apnea present itself and worsened it.
#3. What have you been able to do to find some relief from the eye strain / calm the movements down?
Due to my work in IT, I tend to have artificial light in my face all day long. A cool damp cloth over my eyes when I get home from work for about 30 minutes REALLY helps the fatigue.
#4. Have you noted any advantages in eyesight over “normal” vision people? In my case, I have found my eyes are much more light sensitive, which means my night time vision is MUCH better than most peoples. I tend to not turn the lights on when moving about the house at night uniless it is pitch black and even a bat would have trouble navigating. HOWEVER, I despise full mid day summer sun. I own a car with a sunroof that my wife loves, I wear wraparound prescription sunglasses to mitigate the glare I get from it.

I too have noted the issues of coming out of REM to straight awake. For me it’s sometimes frightening. If I am in REM, and I wake up, say my alarm goes off, I can’t even force my eyes to focus for at least 5 minutes or so. Usually 10 minutes. I have had a few times it has been longer and left me terrified it wouldn’t clear up. The dreams in REM for me tend to be almost more vivid than reality, especially when my eyes won’t cooperate when I first wake…

As you mentioned, sound can be related, you may want to experiment with what sounds work for you best to calm the motion down.

For ME, and my experience living with Nystagmus, the worst impacts of the disorder are psychological and social. I endured a LOT of harassment in school as a kid to the point I despised school. I loved learning, still do, but hate school and the environment. I caught flack from not just students, but from teachers too. And while I scored very high in standardized testing and excelled in my classes, I was put into special ed classes over it. (I’m a self taught UNIX systems admin and programmer, I speak, read, and write 4 human languages, and can program in 6 computer languages). Other students were less than kind in regards to my class assignments, I NEVER wanted to be seen coming in or out of that classroom, so I actively avoided showing up to school.

Lastly, to the best of my knowledge, at least the type of nystagmus that I have is neither preventable, nor curable, unless of course I chose to intentionally not have offspring. According to the specialists I have seen, most cases of nystagmus are hereditary, my mom had it, my brother has it, my grandfather had it etc… However, like I said, there are a lot of different types and causes for nystagmus, some inherited, some caused by external / environmental causes, some with curative treatment, most without.

For more information on the subject please see…


and

Thanks for responding with your opinion! I am grateful you gave your questions. Please allow me to process them, and I will get back to you shortly.
I will write this questions down. Give me some time. I love that someone also with my condition has said something. I like it!

I have Congenital Nystagmus from birth, and I have many types of Nystagmus. My eyes go side to side, in circles and in many different directions.
I also have Glare Nystagmus. Which means I can’t recover quickly from bright light.
My nystagmus seems to tie in to other things such as the hippocampus.
It’s like a spatial memory disorder and a sleep disorder. Not fully a sleep disorder but the nystagmus is like a misunderstood condition.
Those go together.
Spatial Memory and Sleep make nystagmus react. As if the body is sending mixed signals to the optic nerves and cerebellum. The Cerebellum is known for sleep and memory. The cerebellum gets sent info from the eyes, then to the nerves, to the hippocampus, which goes to the cerebellum and the occipital lobes (visual). If the cerebellum thinks it is in a sleep phase or anything it stays active, leading to sleepiness.
It is like a Cerebellum and Hippocampus disorder that ties into the eyes.

Here are some answers to your questions…
1.No I cannot drive because of my symptoms of eye movements and dizziness messing with my ability to look around without problems. I also didn’t feel comfortable when I had to drive in Driver’s Ed. I quit driving.
So I forced myself to not learn how to drive, however I passed all the written tests, I probably would only drive a go kart for fun.

  1. I can do things just fine, however looking at someone in bright light, getting eye tests, looking at notes on the board when I was in school. and looking at a tv laying on my back is hard without eye movements. I am sensitive to flashes and at times can’t look at tv without wanting it off.

  2. I have found relief at times from testing many different tricks.
    1a. The dark cloth on the eyes, to prevent seizures or eye strain.
    2b. Having small lenses (Such as having trick glasses) kept my eyes looking straight. But it depends on the glasses. Regular glasses never work (Most sunglasses don’t work either and make it much worse)
    3c. Having artificial light in the day and none at night. (Or orange light in the day and blue light at night works too)
    4d. Staying away from artificial light (natural light) helps to keep it at bay.
    5e. Going outside works with spatial memory (That part of your hippocampus that lets you body know where it is)
    that can let the nystagmus get stunned. Like I said stimulating memory helps (Example: Stay in bright light while writing notes outside or in a big room inside.) Spatial Memory can be a confusing word it basically is just how your body reacts to surroundings or space around it.


  1. I guess I can see more light than others, you know what I’ve found out? It’s the eyes flickering rods. Due to being in a bright room with artificial light made me learn that the eyes will try to accommodate. However my night vision sucks. These eyes of mine a lot of the time can handle light inside at all (Usually those UV light bulbs)

  2. I call that a lucid dream, and I have those almost everyday. And I can force myself sometimes to fall asleep, and wake myself up.
    Do you have daydream like hallucinations after coming out of lucid dreams?

You know we are similar in ways. I got bullied too. I love that you’re getting through your eye condition. I hate artificial light but try to do the best I can when using my computer.

The sounds that work for me are: Little beeps and not big beeps from an alarm clock. (EHS) can make you hear sounds before and after sleep, even normal visioned people can have these sounds jump scare them! And it isn’t life-threatening. Take it as a thing that is a cue for your brain, like yawning.
I hope I helped you with your questions!

Great responses. And now I understand a bit more about this.

Mine is congenital nystagmus, and is only horizontal. As I have aged the symptoms have gone down to the point that very few people realize there is something different about my eyes. You know how folks say your eyes change after 40? Well mine started changing at about 30. Prior to my 30s the nystagmus was VERY obvious, after about 35 or so it couldn’t hardly be seen. My wife and I started dating when I was 36, and it took her about 6 months to realize that my eyes did wander even though I was completely up front about it.

A couple of items of note with my situation.
#1. I have never seen my eyes move. I have no clue why but I can not perceive the motion when looking at myself in the mirror. However, I have noted the motion in video.
#2. Since my mid 30s, nobody except for my wife and my doctor has even noticed it, EXCEPT, when I let myself get too tired, I tend to get the “head wander”. I have had colleagues ask me why I am nodding “no” several times. I despise having to explain it.
#3. My eyes get tired really fast working at the computer.

A cool cloth on my eyes relieves some of the fatigue.

I’ve never heard of the link to brain function. I have always been told that it is an issue with the optic nerve. Again this is likely due to the various types of nystagmus.

I can understand you not noticing. If it’s going away, that’s great!
I can’t see mine move in the mirror, but I see them move, even the slightest movements I see.
Example: Small shaking, like mini eye-quakes. There’s also cerebellum-quakes that happen if you are very light-sensitive. Your eyes need protection from a screen. When exposed to too much light my cerebellum hurt. I woke up once having a focal-seizure with nystagmus and head pain. My cerebellum was shaking. My only guess is that nystagmus is like a sleep-phase with the body being awake.
My brain must have been overworked.
I found a forum from the 90’s and one said theirs stopped in their 40’s but most will have it for longer.
One thing to note is your screen. Try really good sunglasses that have protection all around. Those glasses make white light into blue light. If you’re having trouble sleeping trying inducing it by moving your head.
I laid on my back, then but my head back and caused my cerebellum to activate. That turned me sleepy and I quickly was dreaming a minute after. That American Nystagmus Network wasn’t as good as this site.
That remedy about dark cloths on the eyes works along with dark rooms too.
If you feel light sensitive, turn off the lights. The eyes were never meant to be overworked by looking at light like this. And honestly I think Nystagmus starts because of electronic lights. When I start sleeping at times I would get darkness before a dream. Darkness helps stun the eyes and makes them slower.
bright colors makes the eyes go faster. I’m not sure about this, but I think light and dark are like cues for phases of sleep. Once I woke up out of a dream ( A lucid one) And I had my nystagmus stop for 20 minutes. But my TV got me back to my nystagmus again. I’m my dreams I can simulate nystagmus, which causes pain after I wake.
I seriously think that the brain uses dreams as an important process. Lastly the optic nerves send signals to turn on and off sleep phases. So when the eyes are closed the eyes work still. Try to adjust your screen and try accessibility options. Warmer Colors turns your iPhone orange for ‘good sleep’.